Man battling dystonia trying to raise national awareness
WARREN, Mich. (WJBK) - Jay Dunn has a movement disorder that's truly devastating -- and it's one you've probably never heard of. But, once you meet him, you'll never forget him.
Jay knows it's hard for the world to look at the way his body moves, but when asked if he's in pain, with the help of his computer, his answer is reassuring.
"I know it looks bad, but it looks worse than it actually is," says Dunn, 35. "I'm just very frustrated."
Jay has dystonia, a neurological movement disorder that causes his muscles to contract and twist. But inside, this body is a smart man who longs for normalcy.
"I just want to do what others can do," Jay says.
Subtle distortion became noticeable when Jay was just 6 years old. Within five years, his mother describes his body as looking like a little pretzel.
But this boy, growing into a young man, was fiercely determined, choosing to ditch the wheelchair and walk through the halls of Warren Woods Tower High School. When he walked across the stage at graduation the crowd stood and cheered.
Mike Delise was among that crowd for his daughter's graduation.
"Jay's like a son to me," he says. "You would do anything for your son. That's how I feel about Jay."
That's why for 15 years Mike has been advocating for Jay, raising awareness of dystonia. Now he's fighting for signatures.
"It will take you 30 seconds to sign this petition," he says. "And you only have to be 13 years of age. And in 30 seconds you could change someone's life forever."
After successfully getting Gov. Rick Snyder to name September dystonia awareness month in Michigan, Mike is one of the people leading the charge to get this disorder national recognition.
"That brings a lot more awareness," Mike says. "That will lead to better funding and a cure, right now there is no cure."
Jay is a student at Macomb Community College and had the chance to meet President Barack Obama on his most recent visit.
95,000 signatures are needed in the next two weeks to get the president to consider giving dystonia national recognition. CLICK HERE IF YOU WOULD LIKE TO SIGN THE PETITION.